On May 10, 2006, at only 6 months old, Sophie was diagnosed with Infantile Spasms...a RARE and CATASTROPHIC form of epilepsy. She continues to battle this disorder on a daily basis. Only after she had the majority of her left hemisphere of her brain removed (on May 29, 2009) has she had a relief in seizures (though she continues to show spiking in her EEG). She has shown much improvement in development since the surgery.

Friday, December 09, 2011

Game Plan

This is hard. So hard. Because I know she is going to come out with some weakness. I just don't know how much yet. And I do not know how much of it will be permanent. They said to expect her to get frustrated and that she will need the support of her family to get through it. Those are difficult words to hear.

Doesn't she look great?

Plans are different than what we thought they would be before we started this whole process again. Initially, we thought she would just need Multiple Subpial Transection (MST). But the intracranial subdural grids showed a focus. And for a lack of better terms, you can say she has focal hypsarrhythmia in the cushion surrounding the lower bottom half of the motor cortex. So, Dr. Sood is going to resect the cushion on the entire left side of the motor cortex. Then, perform the MST on the entire sensi-motor cortex. They will once again put the subdural grids back on and monitor the brain wave activity. If they are still seeing spiking in the lower half of the motor cortex (which controls the facial muscles), they will then resect that tissue. And then close her up and hope to God that she never has a seizure again.

A7 and A8 represents the cushion surrounding the lower bottom half of the motor cortex.

Speaking of seizures, she has not had a visible one since 11:55am yesterday. Just 3 hours prior to that, they had started her on Fosphenytoin (IV form of Dilantin). Very interesting but that doesn't change the surgery. The focal hypsarrhythmia and spiking still showed on the EEG.

During her left subtotal hemispherectomy (that she had 2.5 years ago), Dr. Sood removed all the tissue in her left hemisphere except the sensi-motor cortex plus one centimeter of tissue (cushion) that surrounds it.

Okay, let me try to explain this in simple terms because I know when I tried to explain it to my family last night, it became confusing to them.

Think of Sophie's sensi-motor cortex as a slice of white bread. Now draw a vertical line down the middle of the piece of bread. The left side of the bread is the motor cortex. The right side of the bread is the sensory cortex. The vertical line is a major artery. The crust that surrounds the slice of bread, that is the cushion. Between the cushion and sensi-motor cortex are small arteries that supply blood to both areas. The closer you get to the sensi-motor cortex, the higher the risk of impairment. Thus, the reason for the cushion.

Now think of taking a scalpel and separating the crust from the white part of the bread without actually removing any of the white part and avoiding all the arteries. Not easy. Now turn the crust of the bread into a squiggly line. Even more difficult. Dr. Sood will be performing this surgery microscopically.

The part of the cushion they are removing is attached to the motor cortex that controls her right hand and right side of the face. Therefore, there will most likely be weakness in this area. But not total loss of control. She will probably lose 20% of the function of her right hand. But she should regain all of her facial muscles because the head is bilaterally controlled by the brain.

I believe this change in plan is good. I *think* it gives her a higher chance of seizure freedom. Even though it does give her a higher risk of motor impairment, the higher chance of seizure freedom outweighs that risk.

3 comments:

Finding a focus is good. Or at least good when you're already committed to surgery. That slice of bread analogy was really effective! We could totally teach together! Hopefully, much of her right sided function has already shifted to the right hemi and will make recovery move along quickly.

Oh, Elaine. I cannot imagine being in your shoes today, although I've tried to imagine it for my girl many times. I'm so glad they found the focus, and I'm excited to know that seizure freedom IS a possibility! I will continue to focus on those things, even those I'm biting my fingernails off for you! Prayers for you and sweet Sophie today!

My mind has been on you guys all day today. So relieved to read (from facebook) that the surgery is over. Now, hopefully the seizures are over as well. Hope you are holding up okay and I so wish I could give you a huge hug right now. I know how emotional this day has been and I absolutely cannot imagine enduring it twice. You are so incredibly strong. And, by the way, she looks completely beautiful. (((HUGS)))